Social Work Practice with Disability: Moving from the Perpetuation of a Client Category to Human Rights and Social Justice

Abstract

In this article, we propose an alternative stance to the ways in which disability is theoretically and practically approached within the field of social work. We begin with a critical analysis of how contemporary views of disability and response praxis came to be. Building on history and current scholarship from humanities, social sciences, and natural sciences, we then advance a progressive theoretical framework, explanatory legitimacy theory (DePoy & Gilson, 2004, 2007). Explanatory legitimacy theory locates disability within the broad context of human diversity, uncouples diversity and thus disability from the bodies and backgrounds mentality of current diversity thinking, and illuminates an alternative value and philosophical frame to inform and guide social workers concerned with furthering the profession’s mission of social and distributive justice for all people.

Over the past several decades, disability and social work have become increasingly strange bed fellows. In this article, we discuss why and then propose a philosophical and theoretical direction for reconciliation. We begin by gazing backwards in time to set the chronological context for current debates about the term “disability.” Building on history and current thinking, we then advance a progressive theoretical framework, explanatory legitimacy theory (DePoy & Gilson, 2004, 2007), which locates disability within the broad context of human diversity, uncouples diversity and thus disability from the bodies and backgrounds mentality of current diversity thinking, and thus illuminates an alternative value stance to inform and guide social workers concerned with advancing the profession’s mission of social and distributive justice for all people.

1. What Came Before Us

There is record of concern with “the atypical human” as early as ancient civilizations (Longmore & Umansky, 2001). This history creates an opaque but important window on how civilizations responded to embodied difference. Unfortunately, in this short space, we cannot do justice to the richness of this history, but we can provide a brief chronology that summarizes the critical historical turnings necessary to inform current debates and understand contextual responses to atypical humans in contemporary times. Whereas diverse notions of and approaches to atypical bodies have occurred, the following commonalities can be seen across chronology:

(1) in each era there have been many potential and accepted explanations for a single atypical human characteristic,

(2) these explanations form the basis for categorization and subsequent response to category members, and

(3) the responses proffered provide an analytic window on the beliefs, values, politics, economics, intellectual trends, and level of technological development of the times.

We enter our history through a linguistic portal, as this symbolic element of social and cultural groups is critical in revealing contextually embedded values and meaning (Belsey, 2002; Baudrillard, 1995). First, note that we use the terms typical and atypical to denote a full range of frequency from most to least respectively. We have selected this terminology, rather than normal/abnormal, to circumvent the value judgments that are embedded in the normal/abnormal binary.

The term “disability” has only recently become a signifier for the grand category of atypical bodies. Its predecessor, “handicap,” was alleged to have emerged from the cap-in-hand proclamation, in which Henry VII in 1504, recognizing the plight of injured soldiers, formally allowed these worthy citizens to beg in the streets as a means to their own subsistence. More broadly, the recognized use of the term handicap is an equalizing scoring system in which disadvantaged persons are artificially boosted to increase the likelihood of their success when positioned against a superior opponent. In the early part of the 20th century, the term handicap was ascribed to individuals with bodily differences that ostensibly placed them at a disadvantage, and ultimately the word “handicap” in this sense, came to mean a specific embodied condition such as a “physical or mental handicap.” Given the pejorative notion of bodily inferiority, it is no surprise that a euphemistic term to replace “handicap” was sought to describe bodies that did not conform to the “typical.” It is curious that the term “disability” was selected, given that the prefix “dis” emerged from DIS, the name given by ancient civilizations to the ruler of Hades, or the underworld. DIS was portrayed as punishing mortals by extracting their health, wellbeing, and capacity to function in their environments. The use of DIS is consistent with the disdain for atypical bodies in Ancient Greece. While those who were mildly atypical were excluded from community life (with the exception of those who were saluted because they sustained bodily injury in war), extreme deviations from the typical were considered inhuman (Martin & Volkmar, 2007; Braddock & Parish, 2001) and left to die. Thus, myth, symbol, and tolerance in ancient Greece demonstrate the historical common denominator of multiple explanations and responses to atypical bodies on the basis of why the atypical had occurred, rather than on the atypical characteristic or need itself.

In the Middle Ages, the typical tapestry against which the atypical emerged was frayed and threadbare, characterized by poverty and deprivation. Human conditions such as blindness, deafness, and lameness that are so often associated with impoverished living conditions were woven into daily life and image (Braddock & Parish, 2001; DePoy & Gilson, 2004; DePoy & MacDuffie, 2004). So rather than embodied phenomena such as blindness or lameness being considered atypical, only extreme deviations were located as marginalia, and in concert with the religious and intellectual trends of the middle ages, were attributed to supernatural causes, followed with responses that were consistent with the degree of worth ascribed to each explanation (Braddock & Parish, 2001; Winzer, 1993). Of particular note in this time period are the historical roots of charity and faith healing responses to disability (DePoy & Gilson, 2004). Whereas people with atypical bodies were devalued themselves, their place on earth was fabled to be a test as well as an opportunity from God, for those who were fortunate, to demonstrate their charity and tolerance. Faith-based care only for those who approximated the low end of worth was born, and serves as the archetype of contemporary secular charities and institutions.

Moving forward in chronology, as the complexity and differences around the globe became known to civilizations, history moved beyond a single story of one’s own people. Because of this vast history, we narrow our discussion to colonial America where our focus will reside on the North American continent for the remainder of our brief but purposive historical expedition. In the fledgling U.S., an amalgam of both enlightenment and religious thinking, peppered with economic prosperity, increasing economic concern, and the juxtaposition of indigenous and immigrant people created a complex backdrop for understanding responses to atypical bodies. The rationale for inclusion and in-home responses to the atypical that were apparent in early colonial America were breaking down and quickly became supplanted by “medical” explanations (Axinn & Levin, 2000), setting the stage for medical and ultimately broader professional colonization and ownership of the “atypical body and mind” (Mink, Solinger & Piven, 2003; DePoy, & MacDuffie, 2004).

Of particular historical importance to understanding contemporary disability theory and practice responses were the abstract creations of Quetelet, who invented the mathematical constructs of the normal or bell shaped curve and measures of central tendency. These two ideas form the foundation of contemporary empirical knowledge and fabricated the dissection of humanity into the two categories of “normal” and “abnormal” (DePoy & Gilson, 2007a). Applying the bell shaped curve to human variation, Quetelet extrapolated the concept of “the normal man,” who was considered to be both physically and morally normal. Synthesizing probability theory with the “normal man” construct, normal was not only interpreted as the most frequently occurring phenomenon, but morphed in translation to what “should be.” Observation, therefore, turned to prescription, and anyone with observed phenomena on the tail ends of the curve was categorized as “abnormal.” Fields of study and professions (with medicine in the lead) that espoused and reified these positivist approaches to inquiry as truth (such as normal and abnormal psychology, medicine, special education, social work, and so forth) all distinguished between normal and abnormal and claimed the “abnormal” as their epistemic and ontological property as well as their axiological obligation (DePoy & Gilson, 2007a; 2004).

It is curious to note that the term disability in the early 20th century did not include medical diagnostic conditions, as revealed in the1906 edition of the Standard Dictionary of the English Language that proffered the following:

lack of ability of some sort,

impotence,

the state of being disabled,

a crippled condition,

lack of competent means,

inability as, the disabilities of poverty.

Legal incapacity or the inability to act; as the disability of lunatics and infants

Note that these definitions are both expansive and progressive in that they do not delimit disability to specific diagnostic explanatory conditions or exclusively embodied phenomena, but rather approach disability from a broad descriptive stance not entwined with explanation.

In an effort to create a politically correct moniker for its current pathologized synonyms (handicapped, incapacitated, crippled, physically challenged, impaired, injured, maimed, hamstrung, wounded, mangled, lame, mutilated, silenced, run-down, worn-out, useless, wrecked, stalled, bedridden, weakened, helpless; confined to one's bed, confined to one's home, confined to a hospital, confined to a nursing home; impotent, castrated, halting, limping, hobbling, palsied, superannuated, paralyzed, paraplegic, quadriplegic, brain damaged, senile, decrepit, on one's back*, laid up*, done for*, done in*, cracked up*, banged up*, broken down*, out of action*, counted out*; see also hurt, useless 1, weakened) the term disability was adopted by professions and now labels one of the largest industries in the United States (Gill, 1992).

Although medical explanations remain primary in defining disability even now, the history of disability took an important turn in the latter half of the 20th century that has significantly influenced responses to it. Disability rights scholars and activists eschewed the medical explanation for disability, since such explanations of permanent deficit were impotent in advancing social justice, equality of opportunity, and rights as citizens for those who were members of the disability club (Nussbaum, 2006; Stein, 2006; DePoy & Gilson, 2004). Rather than accepting themselves as the “work” for the disability industry, disabled scholars looked external to the body to explain disability. Early scholars such as Oliver (1997) and Linton (1998, 2006) proposed the intolerance and rigidity of social and built institutions rather than medical conditions, as the explanation for disability. Words such as inclusion, participation, and non-discrimination were introduced into the disability literature and parlance reflecting the notions that people who did not fit within the central tendencies of Quetelet’s “normal curve” were disabled by stigma, prejudice, marginalization, segregation, and exclusion. Demands for equality of opportunity were anchored on theory and research that documented the locus of disability within systems of oppression and discrimination rather than internal to the organic body. With the view of disability explained by external factors such as social, economic, political, marginalization, exclusion, and abrogation of human rights (Nussbaum, 2006; Stein, 2006) rather than an internal medical condition, the locus for disability and thus for necessary responses has become a moving and complex target. Still, professions, policies, and theory, despite their assertions to look beyond the body, situate disability within the organic human domain, as evidenced by embodied eligibility criteria even for human rights and anti-discrimination legislation, and further exposed by terms such as physical, cognitive, learning and mental disabilities. Because deficient bodies are the object of disability rights discourses and responses, this conceptual quagmire reveals the inherent hegemony of medical abnormality in explaining the atypical and locating disability within the body regardless of the narrative indicting systems of oppression rather than bodies as disabling factors.

Before we move on to disability in social work, we highlight what we have named “the tyranny of the opposite.” We began this paper with a discussion of language because of its powerful and reciprocal role in reflecting, as well as shaping values. And as reminded by the post-structuralists and post-modernists, identical narratives may produce different meanings. Moreover, language is not simply restricted to

what is apparent, explicit, and articulated, but is powerful in its negative spaces or what we refer to as the tyranny of the opposite, or what is NOT said. Words and phrases such as “person first language,” while cobbled by committee so to speak for the purpose of political correctness, are often opaque in what is NOT spoken. That is to say, modifiers that are part of human experience, such as disabled, crippled, retarded, and so forth, rather than being reconceptualized as human diversity, remain NOT desirable, and rather are lexically relocated after “personhood” to obfuscate what is NOT desirable. Inherent and perhaps not effectively shrouded in these linguistic finaglings is the unworthiness of these modifiers and a hierarchy of “worth and NOT worth” on the basis of category membership. Moreover, given the penchant of most schools of social work to equate HBSE with theories of human development, the foundation of social work’s view of humans as structuralists and cleaved into normal or the tyranny of the opposite (NOT normal) is set into motion before students even engage in practice.

1 (a). Disability in the House of Social Work

The history and current residence of disability within social work is a curious one. Given the social justice mission of social work and its mandate “to {attend to}the environmental forces that create, contribute to, and address problems in living” (NASW Code of Ethics, 1999), one would expect that social work would have taken a progressive lead in disability rights. Yet, according to the scholarship of Mackelprang and Salsgiver (1999) and endorsed by Yuen, Cohen, and Tower (2007), Murphy and Pardeck (2005), May and Raske (2004) and Rothman (2002), social work had not attended to disability as a category of oppression, but rather had ministered to “people with disabilities” through the provision of clinical services. And while several social work scholars have asserted their espousal of the social construction of disability (Yuen, Cohen, & Tower, 2007; Murphy & Pardeck, 2005; Mackelprang & Salsgiver, 1999), these same authors encounter the conceptual quagmire from which disability rights theorists cannot extricate themselves, how to think about, talk about, and thus respond to disability as something other than an embodied phenomenon. The use of person first language, which locates disability within a person no matter where the “heinous” condition is lexically placed, as well as the sub-categorization of disability into types such as learning, mental, physical, neurological disability and so forth (Rothman, 2002, May & Raske, 2004) divulge social work values and beliefs even when well-intended claims of disability as constructed are made. And for the majority of the field, disability is a pathological condition that immediately catches the social work clinical eye. By analyzing what is NOT articulated but what is actualized in professional behavior, the tyranny of the opposite once again exposes the social work view that disability is NOT desirable, is NOT strictly a function of environment, and is in need of repair, perhaps through improving the world for citizens with disabled bodies and minds and most likely through providing services that “clientize” (Cowger, 1998) the atypical body. Whatever practice approach is followed to address the category of people with atypical bodies and minds, social work joins full tilt in the disability industry (May & Raske, 2004). Moreover, through succumbing to the politicalization of education, subscribing to developmental theory, and decreasing many of the required disciplinary areas of scholarship beyond social work itself, social work education

has perhaps inadvertently reified disability as a category with embodied deficit as the binding and defining element of membership and identity, and as one in which members needs “help.”

Before we suggest how social work and disability can reconcile, we acknowledge our own conceptual strugglings and ask that, as we did and continue to do, the reader “flips his/her brain.” What we mean by “flipping your brain” is before dismissing unfamiliar ideas that on the surface may create axiological and ontological tension, engage the work, be reflexive, consider alternatives that have not been articulated, and examine thinking that challenges well honed beliefs, values, and ethics. As you might have noticed, we also fall prey to the conceptual paradox, in that we argue against the usefulness of the category of disability itself, but we teach and write about it, and this article is appearing in a special issue devoted to the construct that we wish to eliminate.

2. Moving Forward-Rethinking Disability as Diversity through Explanatory Legitimacy Theory

We now introduce a framework, explanatory legitimacy theory, that invokes and synthesizes diversity and legitimacy theory for thinking about human difference, variation, and categorization in which we parse and then locate diverse bodies and minds. As we will discuss in more detail, the name of the framework depicts the basic tenet that legitimate category assignment and response to category members, in this case assignment to the disability category, is a value judgment that is made on explanations for human phenomena, ergo the appearance of “explanatory” in the theory name.

Legitimacy theory had been advanced as early as ancient civilizations. It examines and predicts what is essential for the assignment of legitimate roles and power positions (Jost & Major, 2002). As it applies to diversity and disability, legitimacy theory informs a complex analysis of what is both gained and relinquished in exchange for membership in legitimate categories. As we discuss later in the paper, we propose an explanation for disability that transcends the debate about whether disability is explained by embodied conditions or environmental discrimination.

Because we view disability as an important element of human variation, diversity theory is a second critical grounding that comprises our theoretical framework. Moreover, as we have noted, whereas we apply explanatory legitimacy to the category of disability in this article, the framework is applicable to a broad swath of human categorizations.

The term “diversity” has changed significantly over time. In the 1906 edition of the Standard Dictionary of the English Language, “diversity” is defined as: dissimilitude; multiplicity of differences; variety. Some prevailing and representative examples of contemporary definitions of diversity are; biological difference (Wilson, 1996), racial difference (Shiao, 2004), noticeable heterogeneity (http://www.hyperdictionary.com, 2005), and minority group membership (Basson, 2004; Healy, 2004). These definitions, which we refer to as diversity patina (DePoy & Gilson, 2004, 2007), are typical of current superficial perspectives in which diversity is viewed as a primary characteristic ascribed to groups possessing specified bodies or backgrounds, which not only describe the essential membership criteria but explain appearance, behavior, and experience of group members because of their

possession of the criterion that admitted them to the diversity club. Moreover, in much of contemporary literature, policy, and practice discourse, the term diversity has been further delimited to a characteristic that belongs to groups perceived as non-dominant and non-privileged such as ethnic and racial minorities, women, non-heterosexual groups (Anderson & Middleton, 2005; Healy, 2004) and more recently, disabled groups (DePoy & Gilson, 2004; Mackelprang & Salsgiver, 1999). Note that the tyranny of the opposite implies that people who are NOT members of these predefined groups are NOT diverse.

Numerous historical and political factors have been advanced for this lexical and conceptual recalibration (Parillo, 2005; Healy, 2004; Tomlinson, 1999). In agreement with Shaio (2004) we suggest however, that a major emphasis in this shift was the failure of multicultural efforts to advance axiological symmetry among groups. That is to say, multicultural efforts fail to rise above proscribing the label of diverse to all people and therefore situate diversity within historically devalued groups with certain bodies and backgrounds pedigrees.

The bodies and backgrounds perimeter fails to achieve what Goldberg (1994) has referred to as incorporationist multiculturalism. Different from less progressive but prevalent contemporary approaches to multicultural equality in which marginalized groups are granted membership to predominant cultures only through assimilation or specialized, group specific strategies that can be eroded or even eliminated, incorporationist thinking locates diversity within all groups, and thus values the contributions and power of each to beneficially transform the other through interaction.

Whereas there are essential and warranted benefits to restricting diversity theory and related responses to selected diversity patina subgroups who have experienced discrimination, there are many limitations, as well. First, viewing diversity as a characteristic of “otherness” sets the theoretical foundation for separation and scrutiny of marginalized groups by those who are in the position to marginalize (Shaio, 2004; Schneider, 2004; Bonilla-Silva, 2003; Rodriguez, 2002; Moller-Okin et al., 1999) and by positing homogeneity within the very groups that are defined as diverse. Assuming group homogeneity on the basis of a single bodies and backgrounds diversity patina characteristic has the potential to promote essentialist thinking and identity politics, and to restrict theory application and community responses to assumed nomothetic need. Second, categories in themselves are constructions. That is to say, the way in which we carve up our theoretical universe can be as diverse as the phenomena that we seek to describe and explain. Third, categories and the theories that fit within them are axiological, dynamic, and change in response to contexts. Fourth, special responses to groups who exhibit diversity patina can be diminished and even revoked as we currently are observing with specialized legislation such as the ADA. Finally, bodies and background views of diversity do not account for the expansion of global, technological communication, and virtual environments in which bodies and backgrounds are irrelevant.

Expanding the theoretical paradigm of diversity to include and extend beyond bodies and backgrounds to include the uniqueness of all people provides many opportunities not only to maintain the important theoretical and applied gains that have occurred from civil rights concepts and movements, affirmative action, and other diversity patina-specific responses, but to advance the social justice mission of social work. We refer to this approach as diversity depth.

2 (a). Explanatory Legitimacy Theory

Explanatory legitimacy theory was initially developed in theoretical opposition to vague and debated definitions of disability. Different from approaches that describe disability as abnormal, or from the binary that explains it as embodied or environmentally imposed, we suggest that it is simply a set of axiological judgments about the explanatory legitimacy criteria that elucidate and apply membership. There are three elements to the theory: description, explanation, and legitimacy. Description encompasses the full and diverse range of human appearance, behavior, and experience from atypical through typical and expected, in which atypical and unexpected description (or what is infrequent in a context) serves as the domain of interest and engenders multiple explanations for its occurrence. Explanation is the “why” of description. Specific to disability, explanation is the set of reasons that the atypical occurs and forms the foundation for judgment and legitimate category assignment. As we have noted, the binary of disability explained as constructed (which includes the social, minority, political, and cultural models that appear in the literature) or embodied (explained by a medical-diagnostic event) is the current forum for debate. Through this theoretical lens, legitimate category membership is determined on the explanation, not because of the atypical description. And in our current climate, medical explanations, whether explicit or shrouded with social justice language, are the primary passwords to enter. Just imagine requesting ADA protection because you are disabled by employers’ negative attitudes toward your appearance. As we noted above, the judgments are anchored on the explanations for the atypical, not the atypical description itself.

The third element is legitimacy, which consists of legitimate category assignment on the basis of an acceptable and valued explanation, and a legitimate response, in concert with the explanation, to category members. Of critical importance here is the recognition that the explanatory criterion not only creates the permeability and perimeter of the category but ultimately shapes legitimate responses to its members. Applied to disability, boundaries that only admit those with legitimate medical diagnostic explanations guide responses such as remediation, rehabilitation, and special accommodation of individuals, whereas explanations that accept constructed reasons as legitimate would guide the response of barrier removal to economic and community participation, universal design, and creative and significant systems change.

Because of the false binary and the conceptual quagmire that we discussed above, in which constructed explanations are only applied to those with bona-fide diagnoses, thereby obfuscating the primacy of medical/diagnostic explanations as the only acceptable and valued legitimate disability club membership criteria, we have posited a third, integrative explanation, disjuncture theory. We assert that this explanation has the potential to heal the explanatory cleavage, to expand responses to a full range of human diversity, to refashion physical, abstract, and virtual environments that promote equality of opportunity and human rights, and to provide an important direction for social work.

2 (b). Disjuncture theory

By disjuncture, we mean the ill fit of the body (broadly defined) with the environment. Current built, virtual and abstract (social, cultural, economic, policy, professional, and so forth) environments are explicitly or implicitly based on standards that hearken back to the enlightenment and in large part continue to be a function of nomothetic thinking. That is to say, what is theoretically typical and average forms the basis for architectural, social, virtual, professional, policy, and functional design of environments, products, practices, and other resources. As an example, our recent inquiry into the rationale for and derivation of architectural standards for door sizes, counter heights and so forth, revealed the continued hegemony of DaVinci’s Vitruvian man as both the foundational ideal and basis for estimating average adult body sizes. This male-centric, adult image is the design bedrock for mass produced and standardized building and product design practices (Gilson & DePoy, 2007). Similarly, assumptions about typical bodies, such as the ability to use both hands for manipulation, to think typically, to behave in an expected manner, to walk with a typical gait, to hear, to see, and so forth provide the prevailing data on which environmental design and professional practice are anchored. Bodies that do not conform to prescriptive averages, therefore, are challenged to participate in environments in which they do not fit, setting up an environmental binary of juncture and disjuncture (See Figure 1).

Figure 1

However, the disjunctures between atypical bodies and their contexts, in and of themselves, are not the explanatory locus of disability. Rather, the intersection of bodies and diverse environments (including but not limited to built, natural, virtual, social, expressive, service, policy contexts) explains ability and the tyranny of the opposite, what ability is and is not respectively.

We assert that disability is a complex element of human diversity that should be viewed by social workers through pluralistic rather than essentialist lenses. Disjuncture explanations serve this professional master. By accepting the explanation for disability as an ill-fit between embodied phenomena and the environments in which one acts, the opportunities for social workers to expand the

range of legitimate responses becomes boundless. This framework creates a conceptual forum for creative and progressive social work thinking and action that uncouples diversity from bodies and backgrounds, unlinks disability from its pejorative diagnostic deficit model, and aims at improving the world for diversity depth. Given that disjuncture theory guides legitimate responses that transcend the false explanatory binary of bodies versus environments as the locus for intervention, the interaction of the two becomes the analytic unit as well as the broadened opportunity for responsive change that accomplishes the social work missions of advancement of human rights for the full range of human diversity.

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Disabilities – How Social Workers Help: Children With Disabilities in the Child Welfare SystemBy Cynthia Weaver, DMin, MDiv, ACSW, LCSW

Children With Disabilities in the Child Welfare System

Work with this highly vulnerable population requires specially trained, compensated, and cared-for social workers.

Case Notes: Dated October 24

Phone call received from the Children's Hospital social worker with a referral of baby Kathy, 3 months of age and recently removed from her home because of physical abuse. Kathy is diagnosed with shaken baby syndrome. I need to find a placement for Kathy as her parents are incarcerated and there are no family members available. The hospital social worker states that Kathy will be ready for discharge in three days. Will I be able to find a foster home equipped to care for baby Kathy's special needs?

Phone message left from Jacob's foster mother communicating the doctors' findings that his cancer has returned. Twelve-year-old Jacob has already had his right leg amputated and is wearing a prosthetic device that he has turned into a "weapon" when his peers tease him. His foster mother shares that she is pregnant with their first child and fearful for her baby's safety as Jacob continues to act out. She is asking for his removal from their home. I have already moved Jacob to seven different homes during his seven years in foster care. I have no idea where to look next for a home for him.

I listen a second time to the next phone message, as it is difficult to understand because the speaker is crying uncontrollably. I learn that Barbara is crying about her difficult decision. I have worked with Barbara since the birth of her daughter, Sarah, a child diagnosed with muscular dystrophy who recently acquired a feeding tube. Barbara is a good mother, learning how best to care for a child with multiple special needs. I've set up in-home services for her so her child would not require institutionalization. Today, her message tells me that she left her daughter in the lobby at the Children's Hospital, exhausted physically and emotionally from years of her care as a single mother. Barbara says she is leaving the state and not to look for her.

I arrive at the multidisciplinary meeting to discuss Jamal's emancipation from the care of Children and Youth Services to the County's Adult Services. The history was that no one expected Jamal to live—as an infant, he was diagnosed with HIV/AIDS. Both his parents died from the disease and there were no relatives to provide care. Multiple foster homes met his needs as a young child. With new medications and technologies, Jamal had a number of very good years. However, recently the disease has taken hold again, with Jamal experiencing numerous hospitalizations and near-death experiences. His most recent years have been spent in group homes, skilled nursing facilities, and hospitals. Next month, Jamal turns 21 and this meeting is an attempt to transfer his care to those in adult services. This is a difficult meeting

for me as his social worker, the nurses who have provided continuous care, and his personal aide, because we know Jamal will not likely have the same level of care we've been able to provide for him as a child. Jamal appears to know this because during the last few months, he has become depressed and has periods of self-mutilating behavior. There are many providers sitting around the table as we take the next few hours to discuss Jamal's placement and services at the adult state-funded nursing facility.

Special Needs

On a continuum of vulnerability, children and adolescents with disabilities in the child welfare system are a highly vulnerable population. When a child or adolescent enters the child welfare system as a result of abuse, neglect, and/or abandonment, a comprehensive assessment needs to be completed to determine appropriate services and interventions to address the child's special needs as a result of this trauma and find an appropriate placement that can best meet the needs of the child/adolescent.

When a child/adolescent with a preexisting disability is separated from the parent/family and enters the child welfare system, already established medical and educational services for the child are often put on hold until placement is secured, records are gathered, and services with new providers are initiated in the geographical area of the placement. The child welfare worker, therefore, has a key role in identifying and accessing appropriate services for children/adolescents with disabilities and their families (biological and foster) within the child welfare system and in the medical and educational systems. To maintain children with disabilities in family and community settings, supportive, developmental, and therapeutic services must be provided to this population of children and to their biological, foster, and adoptive families (Hughes & Rycus, 1998).

A broad definition of a developmental disability is a condition or disorder—physical, cognitive, or emotional—that has the potential to significantly affect the typical progress of a child's growth and development or substantially limits three or more major life activities including self-care, language, learning, mobility, self-direction, capacity for independent living, and/or economic self-sufficiency (Federal Developmental Disabilities Act of 1984). This condition must be congenital, or identified, or acquired prior to the age of 22. Genetic problems, related anomalies in reproductive cell division, traumatic brain injury, auto accidents, and diving are common causes of injury in children and adolescents. In addition, blows to the head in child abuse or shaken baby syndrome may cause central nervous system damage. Mental retardation, cerebral palsy, paralysis, and seizure disorders are possible outcomes of head trauma.

Children/adolescents who are abused or neglected are at increased risk for developmental delays or disabilities. According to Baladerian (1992), "more than 50% of child victims of neglect sustain permanent disabilities, including mental retardation and other forms of learning and cognitive disabilities" (Prevent Child Abuse America, 2002). In a national study by Crosse, Kaye, and Ratnofsky (1993), they found that children with disabilities were 1.7 times more likely to be maltreated than children without disabilities and a study conducted in 1997 in Omaha, NE, found that children with disabilities were 3.4 times more likely to be maltreated than were children without disabilities (Sullivan & Knutson, 2002).

Research indicates that 45% to 50% of children in the child welfare system have a chronic health problem or diagnosed disability (American Humane Association, 2000). A 1997 study by the Child Welfare League of America (1999) revealed that 94% of the children placed for adoption in 1996 had special needs as related to physical disabilities, serious emotional and behavioral problems, prenatal exposure to alcohol and other drugs, and HIV/AIDS. Often, these children's special needs remain unmet, both prior to and throughout the often lengthy period that they receive care in child welfare agencies (American Humane Association, 2000).

Special Training

There is an increased need for competent, knowledgeable professionals who can advocate for children and adolescents with disabilities and their families. Trained social workers will understand the challenges that face families of children/adolescents with special needs and assist them in securing resources and in communicating their needs. Advocacy on behalf of children and adolescents with special needs requires that social workers be skilled and empowered to address areas of discrimination and inadequate resources, with the same zeal a dedicated parent would seek services for their child.

Training must go further than traditional competency training for child welfare workers. Social workers need a comprehensive understanding of legislation surrounding the Americans with Disabilities Act and how to effectively address barriers that inhibit their clients from services for their special needs. Such barriers could be physical, such as access to buildings, or medical, such as limited medical coverage related to insurance coverage or lack thereof.

Additional training in the areas of mental retardation, medical social work, developmental delay, and early intervention will better assist the child welfare worker who has the responsibility of finding and supporting appropriate placements for children/adolescents with disabilities. Social workers servicing this population will benefit from having the advanced training of a master's degree in social work to most effectively identify and work with the various systems involved. Training and networking with medical, mental health/retardation, and community resources is a necessary prerequisite for effectively caring for children with disabilities within the child welfare system (Weaver, Keller, & Loyek, 2005).

Child welfare workers carrying caseloads of children/adolescents with special needs should have training in areas of medical interventions such as CPR for infants and children for safety and competence when apart from medical providers—transporting children to visits and medical appointments. Dependent on the special needs of the child/adolescent, the social worker will need additional training in specific areas, such as the use of apnea monitors, wheelchairs, lifts, ventilators, and oxygen, even if a medical provider is present to intervene or is providing one-on-one care.

The social worker's knowledge of such equipment and interventions will enable the worker to have a more secure level of competence and comfort in working with the child/adolescent, as well as be more credible and accepting to foster parents and birth parents who are already required to have such expertise to care for the child on a daily basis. Child welfare social workers benefit from training in the area of family systems and the dynamic the child/adolescent with special needs creates among the

parent(s), siblings, and extended family members. Working with the child/adolescent with special needs involves the understanding, sensitivity, and interventions with the "whole" family.

Death and Dying

Social workers benefit from having an education and a level of comfortability surrounding the emotional and spiritual underpinnings of death and dying, an area often encountered when working with children and adolescents with disabilities. Child welfare workers should have resources to meet the family's needs should a child die while in care, such as a knowledge of available funding streams for funeral and burial, the names of competent religious leaders to perform services, and funeral director(s) who can provide financially reasonable and sensitive services for marginalized populations.

Social workers benefit from having an understanding of various religious/spiritual and cultural beliefs, an area often encountered at the time of death. Social workers benefit from the ability to explore their own moral/religious/spiritual beliefs surrounding medical ethics, quality-of-life issues, living wills, etc. before working with such populations to avoid countertransference. If they want to retain competent social workers in their agency, administration must understand the impact the dying process and possible death of a child/adolescent has on the caseworker.

Internal agency support through competent supervision, mental health time off surrounding the death of a child/adolescent, and agency group process are successful administration interventions for the longevity of social work staff. The availability and funding for outside, confidential counseling to support social workers in the area of bereavement will help identify possible areas of countertransference and address the social worker's own grief and loss after providing support to children and their families (Weaver, 1999).

Nontraditional Techniques

Creativity can enhance the work surrounding children with special needs as one works outside the box of traditional child welfare. The use of animals with populations identified as "special needs" (elderly, disabled, mental retardation, mental health, prisoners) has proved insightful to their specific needs (Fine, 1999; Delta Society, 1996). Connecting children/adolescents with special needs to animal-assisted activities, therapies, and interventions provides children/adolescents in the child welfare system with not only physical assistance, but the much-needed emotional bonding and unconditional love that is often taken from them when removed from their biological families (Weaver, 2003). The creative use of agency rituals—Arbor Day and planting a tree in memory of a child/adolescent, a memory wall of names to be remembered, an agency gazebo as a safe place to retreat to privately grieve apart from the group—can demonstrate to child welfare workers providing direct care the sensitivity administration has to the effect the death of a child on their caseload has to them.

Caring for the Caregivers

Caseloads containing children/adolescents with disabilities should be smaller for social workers so effective time and energies can be spent in securing additional training and networking with other agency resources. The time spent on a child/adolescent with special needs can easily triple that of a nonspecial needs case, especially during times of medical emergency, hospitalizations, and/or replacements. Training and networking with medical, mental health/retardation, and community resources is a necessary prerequisite for effectively caring for children/adolescents with disabilities within the child welfare system.

Child welfare workers carrying caseloads of children/adolescents with special needs should be identified at a higher level than that of an entry-level social worker, with an increased level of financial compensation to equal the level of special training secured and level of risk taken in providing services to this vulnerable population.

Likewise, child welfare workers carrying cases of children/adolescents with special needs should be afforded the highest level of legal support should litigation be directed towards them during the review of the death of a child while in care. Social workers caring for vulnerable populations often themselves become vulnerable in a highly litigious society and will frequently decline such a sensitive caseload for fear of long-term ramifications to their professional career.

During the past 20 years, the number of children surviving many diseases and illnesses has greatly increased because of the advancement of medical technology and new medications. This is something about which we, as an industrialized society, are proud. However, we also need to understand the implications for the longevity of life for children/adolescents with disabilities that find themselves growing up in the child welfare system, often separate from a consistent, competent parent/caregiver.

The consistency and competency of the child welfare social worker is as critical as the advanced medical technology and new medications for the quality of care for this vulnerable population. The fragility and vulnerability of this population of children/adolescents require the utmost of our sensitivity, advocacy, expertise, and creativity (Weaver, Keller, & Loyek, 2005).

References

American Humane Association (2000). Meeting the needs of young children in foster care. Retrieved May 23, 2004, from http://www.americanhumane.org.

Baladerian, N. J. (1994). Abuse and neglect of children with disabilities. ARCH National Respite Network and Resource Center. Fact sheet Number 36. Retrieved June 24, 2003, from http://www.archrespite.org/archfs36.htm.

Child Welfare League of America, 1997.

Crosse, S. B., Kaye, E., & Ratnofsky, A. C. (1993). A report of the maltreatment of children with disabilities. Washington, DC: National Center on Child Abuse and Neglect, Administration on Children, Youth and Families, Administration for Children and Families, U.S. Department of Health and Human Services.

Delta Society (1996). Standards of practice for animal-assisted activities and animal-assisted therapy. USW: Delta Society. Federal Developmental Disabilities Act of 1984, Pub. L. No. 98-527.

Federal Development Disabilities Act of 1984.

Fine, A. H. (1999). Handbook of Animal-Assisted Therapy: Theoretical Foundations and Guidelines for Practice. New York: Academic Press.

Hughes, R. C., & Rycus, J. S. (1998). Developmental disabilities in child welfare. Washington, DC: CWLA Press.

Prevent Child Abuse America, 2002.

Sullivan, P. M., & Knutson, J. F. (2002). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse & Neglect, 24(10), 1275-1288.

Weaver, C. J. (1999). Supporting the spirituality of children in foster care and their caregivers. In: Silver, Amster, & Haecker, ed. Young Children and Foster Care: A Guide for Professionals. Baltimore, MD; Brookes Publishing Co. pp. 139-157.

Weaver, C. J. (2003). Sinclair's Listening Ears: The Journey of a Feline Social Worker. Lanham, Maryland: The University Press of America.

Weaver, C. J., Keller, D., & Loyek, Ann (in press 2005). Children and adolescences with disabilities in the child welfare system. In: Mallon, G. P., & Hess, P., eds. Child Welfare for the Twenty-First Century: A Handbook of Children, Youth, and Family Services: Practices, Policies, and Programs. New York: Columbia University Press.

People with Disabilities and Social Work: Historical and Contemporary Issues

Romel W. Mackelprang and Richard O. Salsgiver

From the earliest recorded history, people with disabilities have been ostracized, rejected, and discriminated against in society. Although social work has a history rich in advocacy for oppressed people, the profession has been hesitant to become involved with people with disabilities. This article addresses historical and contemporary issues concerning disability. Recent developments in the disability movement, including independent living, are discussed and compared to social work's approaches to disability. Finally, a plea is made to the social work profession and the disability movement to combine efforts to enhance the lives of people with disabilities.

The Americans with Disabilities Act (ADA) of 1990 (P.L. 101-336) was a civil rights landmark for people with disabilities. With the passage of the ADA, Congress acknowledged that the 43,000,000 Americans with disabilities have been subjected to serious and pervasive discrimination. Congress also acknowledged that unlike other populations who have experienced discrimination, people with disabilities have had "no legal recourse to redress such discrimination." From the beginning, social work has viewed itself as the profession with primary responsibility toward people who are subjected to discrimination and oppression, however, the profession has not embraced the causes of people with disabilities as it has other oppressed groups. Consequently, relatively few social workers work with people with disabilities, few people with disabilities enter the profession, and the profession has done little to promote disability rights (Mackelprang, 1993; Mackelprang & Santos, 1992).

This article examines the history of societal values and attitudes about people with disabilities and the rise of the disability movement. Social work and independent living approaches to working with people with disabilities are compared and contrasted, and suggestions for integrating both approaches are provided. Finally, a plea is made for social work to re-evaluate its commitment to people with disabilities.

History of Treatment of People with Disabilities

Throughout the history of humankind people with disabilities have been a part of society; archaeologists have repeatedly uncovered evidence of people with disabilities dating as far back as the Neanderthal Period. Societies treated and responded to people with disabilities based on their cultural belief systems.

Ancient Beliefs

Neolithic tribes perceived people with disabilities as possessed by spirits. When the spirits were per-ceived as evil, escape routes were fashioned by drilling holes in the skulls of people who were thought to he possessed (Albrecht, 1992). The Spartans, with their rugged individualism, abandoned young and old people with disabilities in the countryside to die. Plato (1991), to whom Western culture owes much

of its ethical framework, viewed people with disabilities as standing in the way of a perfect world: "the offspring of the inferior, or of the better when they chance to be deformed, will be put away in some mysterious, unknown place, as they should " (p. 183). The Romans, who borrowed the concept of reciprocity from the Greeks, gave assistance to adult people with disabilities with the expectation that they would demonstrate thanks by not rioting. However, like the Greeks the Romans also abandoned disabled or deformed children to die (Morris, 1986).

Judeo-Christian Beliefs

Judeo-Christian tradition, prevalent among Europeans during and after the Middle Ages, taught that people with disabilities were expressions of God's displeasure (Livneh, 1982). Although Judeo-Christian philosophy did not advocate killing, people with disabilities were ostracized and stereotyped. Disability signified "sinner" to the ancient Hebrews, and people with disabilities were thought to be demons. People who were deformed, "crippled," or of short stature were forbidden to become priests. The Old Testament forbade people who were blind or lame from entering the houses of believers (Wright, 1960). In the New Testament, people with mental disorders were believed to be possessed. It was thought that people with disabilities had them because of their own or their parents' sins. Treat ment centered on spiritual redemption (Albrecht, 1992).

Judeo-Christian thought, on which much of Western culture is based, has also taught that bureaus are made in God's image and are different from and superior to the rest of the animal kingdom. Livneh (1980) contended that people with disabilities remind those without disabilities of humankind’s link with the rest of the animal kingdom and of their own fallibility.

Similarly, Western culture has engaged in a collective denial of aging and death. People with serious or terminal illnesses challenge that denial and thus tend to be avoided, (Becker, 1966), a denial that generalizes to those with disabilities. Livneh (1982) believed that the segregation of people with disabilities decreases the chances of association, allowing people to deny the eventual loss of physical integrity and ultimately death. Livneh also contended that people with disabilities threaten those without disabilities with the knowledge that their limber walk, strong muscles, and sexual prowess are temporary.

17th-Century Beliefs

The rise of capitalism during the Industrial Era presented unprecedented labor needs and social problems. With the codification of the Elizabethan Poor Laws in 1601, England endeavored to deal with the dilemma of caring for needy people while maintaining a labor force for its developing industries. Stone (1984) suggested that the Poor Laws were England's attempt to reconcile this di lemma by creating a "system of categorical exemption' (p. 51) by classifying poor people into deserving and nondeserving categories. Orphaned, blind, and "crippled" people were deemed deserving and received charity less be-grudgingly than so-called nondeserving poor people.

18th-Century Beliefs

By the mid 1770s, a new perspective on the human situation, the Enlightenment, was making its impact on Europeans and Americans. Out of the tenets of the era came the idea that perhaps humans could be perfected. Within this environment, a model of treatment began to emerge that defined people with disabilities by their biological inadequacies. In the United States, institutions dedicated to perfecting the imperfect sprang up (Rothman, 1971) with the hope that professional intervention could cure those inadequacies. When a cure was not possible, people with disabilities could at least be trained to become functional enough to “perform socially or vocationally in an acceptable manner” (Longmore, 1987b, p. 355).

19th-Century Beliefs

The 1800s began with the continuing belief that humans could change. Professionals held great hope that “deviants,” which included people with disabilities, could be molded into assimilated, less threatening, more acceptable people (Rothman, 1971).

However, by the end of the 19th century, the ominous philosophy of social Darwinism and eugenics came to prominence. Deutsch (1949) quoted Darwin's cousin Frances Faltin, who described eugenics as "the study of the agencies under social control that may improve or impair the racial qualities of future generations either physically or mentally" (p. 358). Rhodes (1993) concluded, "the movement emphasized the dominance of heredity and sought to encourage the reproduction of socially desirable individuals (positive eugenics) and discourage the reproduction of the undesirable (negative eugenics)" (p. 6).

Eugenics became a convenient explanation for the ills of society and cast people with disabilities in a frightening light, making them extremely vulnerable. Professionals lost confidence in their ability to perfect people with disabilities, concluding that they were innately unproductive and thus endemically without worth. No intervention could bring about change because the laws of nature deemed people with disabilities unfit (Longmore, 1987a). People with disabilities were to be prevented from marrying or having children for fear of propagating their imperfections. As the 19th century progressed, institutions to deal with the threat and nuisance of people with disabilities increased dramatically, and they were increasingly isolated and institutionalized, sometimes in sub-human conditions.

20th-Century Beliefs

Early 20th-century America offered little attitudinal progress. People with disabilities were objects of shame and disgrace. Parents, often on the advice of professionals, hid disabled children from society in their homes or in institutions. Gallagher (1985) recounted the prevailing attitudes of the time in the experiences of President Franklin D. Roosevelt as a person with a disability. Roosevelt was continually forced to compensate for society's attitudes and to hide his disability from the public.

World War I and World War II marked superficial advancement for people with disabilities. Federal rehabilitation legislation produced money for treatment of veterans disabled by war. However, the stereotype of people with disabilities as nonproductive and socially abject was prominent through the

1950s (Longmore, 1987b). During the second half of the 20th century the ideas of past eras continued to influence professional practice.

Mental health practice has focused on individual weakness and pathology. The DSM-IV (American Psychological Association, 1994), the major diagnostic tool of mental health practitioners, is devoted to the diagnosis of pathology, with almost no attention given to strengths. Similarly, medical evaluations measure pathology and the lack of pathology but rarely measure strengths. Diagnoses within these settings also focus exclusively on the individuals being diagnosed, neglecting social, environmental, and contextual factors that influence people's situations.

The medical model views physicians as treatment directors and nurses, therapists, social workers, and other health care professionals as assistants who help direct patients' lives. Patients are passive recipients of treatments that are dispensed by professionals who are experts. The experts make the decisions and inform patients of those decisions (Trieschmann, 1980). If people with disabilities who use professional services attempt to become active consumers and control their care, they become vulnerable to the withdrawal of help from providers who do not like having their authority questioned. This dependence forced on people with disabilities by professionals and society as a whole has led to great dissatisfaction. Thus, in the last decade of the 20th century, people with disabilities have demanded the right to take control of their lives.

Independent Living and the Minority Model

The birth of disability consciousness in the United States arose out of the turbulence of the 1960s, a decade of re-examination, challenge, analysis, and change. For the first time in U.S. history, perhaps even in Western history, significant numbers of people with disabilities demanded access to the mainstream of society. The disability movement matured with the development of the independent living concept in the early 1970s. Initially led by people such as Lex Frieden, Judy Heumann, and Ed Roberts, independent living applied the minority model as the foundation of the political process of gaining the civil rights of people with disabilities (Berkowitz, 1987). Whereas traditional Judeo-Christian culture and traditional models of professional treatment focused on individual pathology (Weick, Rapp, Sullivan, & Kisthardt, 1989), independent living focused on societal responses and discrimination as the primary barriers to civil rights.

The independent living perspective views people with disabilities not as patients or clients but as active and responsible consumers. Independent living proponents reject traditional treatment approaches as offensive and disenfranchising and demand control over their own lives. For example, when people with physical disabilities have needed physical assistance with self-care, that care is primarily provided by licensed professionals assigned through formal agencies. In contrast, independent living proponents retain their own personal responsibility to hire and fire people who provide attendant care. They eschew the need for licensed providers such as registered nurses to provide care, favoring instead attendants who are trained by the individuals with disabilities themselves. Social workers become involved with these individuals only by request.

Traditional medical paradigms define the nature of disability by individual deficiencies and biology. For example, justifications for keeping children with disabilities out of regular public schools have centered on their impairments. Proponents of independent living contend that children with disabilities have not been allowed to attend regular schools because of physical, attitudinal, and legal barriers and not because of individual incapabilities. As a group--as a minority--these children have been denied their right to education (Meyerson, 1988).

The minority model asserts that discrimination against people with disabilities is rooted in the beliefs and values of the culture. The most fundamental belief is that people with disabilities cannot and should not work or otherwise be productive. For example, Stone (1984) stressed that residual benefits of the Elizabethan Poor Laws are the ensured support and services to people with disabilities in the current welfare state. What Stone and others failed to recognize is that categorizing people with disabilities as deserving of charity creates a dubious benefit wherein they qualify for an ever-eroding baseline of services and are relegated to subsistence-level living. At the same time, the social welfare system creates pervasive disincentives to work and reinforces the idea that people with disabilities do not need to work. For example, if people receiving Social Security Disability and Medicare return to work, they will lose not only their payments but also their medical coverage, which would be financially devastating and potentially life threatening. The minority model views the lack of work options as repressive and decries this discrimination.

Contributing to the belief that people with disabilities should not work is the role of sick people in Western culture. People with disabilities, whom society assumes are "sick," are expected to fill this rote even when they are perfectly healthy. As with those who are sick, people with disabilities are to be taken care of and to be provided for. Their only obligation is to be grateful for the help given them (Devore & Schlesinger, 1987), thus subjecting them to a form of benevolent oppression.

When the expectations that people with disabilities should not work and should fulfill the sick role are foisted on people for their lifetimes, they invariably believe those messages and act accordingly. Also, people with disabilities have been given few opportunities to develop skills associated with independence and self-sufficiency. Attributions of personal unworthiness based on spiritual beliefs further promulgate oppression and isolation.

The behavior, self-concept, educational achievement, and economic success of people with disabilities can be understood only by viewing people with disabilities as a minority group who are subjected to discrimination found in their social environments (Fine & Asch, 1988). Independent living encourages people with disabilities to begin to assert their capabilities personally and in the political arena.

Social Work, Independent Living, and Disability

Social work philosophy shares many similarities with the minority model of viewing people and their environments. Social workers use a systems perspective, acknowledging the influences of the environment on personal functioning. However, the person-in-environment perspective differs from independent living in that it maintains a heavy emphasis on Freudian and neo-Freudian philosophy (Hepworth & Larsen, 1993). With the emergence and expansion of other trends of thought in recent decades, the importance of systems, culture, and social supports has become increasingly emphasized. Ecological systems theory has been a natural outgrowth and synthesis of these trends (Hepworth & Larsen, 1993).

As social work matured from a person in-environment to an ecological systems approach, a major method of practice evolved from casework to case management. Moore (t990) contended that "case management" is a new name for traditional social work practice; however, case' management has a stronger emphasis on professionals interacting with multiple systems that affect clients. In addition, case management emphasizes the use of a number of roles from counselor to advocate to educator to mediator. Social workers also "empower clients to become active participants and decision makers in all phases of their lives" (Sheafor, Horejsi, & Horejsi, 1991, p. 64) and help people find the power within themselves (Saleebey, 1992). This practice perspective is further reinforced by the strengths-based practice model (Rapp, 1992). Weick et al. (1989) emphasized that assessment and intervention based on the strengths of individuals is the cornerstone of empowerment: "Focusing on human strengths is one significant strategy for helping people reclaim a measure of personal power in their lives" (p. 354). The ecological systems perspective combined with a strengths-based case management approach that uses the principle of empowerment is a departure from the medical model and is a step toward the minority model.

However, the profession has not shown a consistent commitment to people with disabilities. The numbers of' social work students and educators who have a disability are low, there are few disability-related articles in the social work literature, and social work conferences are nearly bereft of presentations on disability (Mackelprang, 1993). Likewise, people with disabilities have not regularly sought social work services (Servoss, 1983). One reason may be that social workers often practice in organizations such as hospitals and mental health centers in which professionals make the decisions, thus relegating clients to passive, receiving roles. Many social work jobs are also located in public sector settings that are bureaucratic and cumbersome. Longmore (1987a) recounted the experiences of people with severe physical disabilities attempting to live independently: "severely disabled adults. . . must spend their lives confined to families' homes or imprisoned in institutions .... The very agencies supposedly designed to enable severely physically handicapped adults . . . to achieve independence and productivity in the community become yet another massive hurdle they must repeatedly battle but can never finally defeat" (p. 153). Longmore also offered illustrations of the catastrophic effects of public social policies in the lives of people with disabilities. When social workers are identified as the professionals who implement and enforce such policies and regulations, they are viewed with skepticism and distrust.

Empowerment has been a guiding tenet of both social work and independent living. However, independent living views empowerment from a different perspective than social work. Whereas social

work envisions professionals involving clients or patients in prescribed care or treatment plans, independent living views social workers and other professionals as consultants only. Even when individuals have severe disabilities that limit learning and decision-making capabilities, social workers and other professionals teach skills and facilitate self-management but do not assume responsibility or control over people. In this manner people's capacities are maximized and abuses of power (for example, inappropriate institutionalization, involuntary sterilization, coerced treatments) are prevented.

Independent living proponents believe that the greatest constraints on people with disabilities are environmental and social. Social work, while acknowledging the multiple systems that affect people, often focuses on individual factors that contribute to client problems. Social work's tendency to intervene in personal problems without being asked is rejected by independent living pro ponents as intrusive.

Although social work has pioneered efforts to encourage tile use of natural helpers in people's environments, departing from traditional reliance on professionals used in the medical model, inde-pendent living proponents assert that the informal support model still breeds dependence, shifting control from formal providers to informal providers (DeJong, Batavia, & McKnew, 1992). Independent living espouses a philosophy that advocates natural support systems under the direction of the consumer.

Social Work and Independent Living: Forging a Partnership

The lack of social work involvement in the independent living movement is disturbing because both have much to offer each other.

Benefits to Social Work

Social work can benefit greatly from a shift in focus from case management in which clients are labeled "cases" to a consumer-driven model of practice that acknowledges self-developed empowerment and not empowerment bestowed from others. The independent living movement has more than 20 years of experience developing and refining this approach. The following example illustrates the differences

Sharon, age 32, received social work case management services after an automobile accident caused a spinal cord injury that resulted in quadriplegia. During Sharon’s hospitalization her social worker facilitated the procurement of Medicaid, ordered medical equipment such as a wheelchair, procured the services of a home health agency for home nursing visits, arranged for vocational rehabilitation services, and worked with Sharon’s family to prepare for her discharge from the hospital. Similar case management services were provided for six months after discharge; the social worker generally informed Sharon of the services she would be providing, and Sharon also made request for services.

Six months after discharge from the hospital, Sharon became involved with a local independent living center for peer counseling and independent living training. When Sharon began to have trouble with Medicaid, she asked the independent living counselor to intervene on her behalf. Similarly, she asked the counselor to procure a commode chair. Rather than meet her requests as the social worker had

done, the independent living counselor taught Sharon to self-advocate with Medicaid and guided her through the process of ordering medical equipment so Sharon could do so in the future. In addition, the counselor informed Sharon how she could gain access to a program in which she could hire and direct her attendants rather than having nurses and aides assigned to her. Sharon developed the knowledge and skills to direct her own personal care, including hiring, firing, and money management, essentially reclaiming control over her life.

The social worker viewed her interventions on Sharon's behalf as client centered and empower ing. She took control in the immediate weeks and months after Sharon's accident because "to ask Sharon to do so would be overwhelming because Sharon needed time to adjust to her injury. As time progressed, the social worker maintained her involvement level because working with so many agencies was "complicated.' Her actions empowered Sharon because she was able to access numerous services. The social worker always informed Sharon of her plans to assist Sharon, and Sharon often requested the services the social worker provided. The social worker cited her close relationship with Sharon and Sharon’s appreciation of her efforts as evidence of the effectiveness of their relationship

Although the social worker’s activities helped Sharon, the social worker unintentionally encouraged dependence and impeded Sharon’s self-determination. The independent living counselor, on the other hand, saw her role as facilitating Sharon’s self-determination, and she did not consider directly intervening in activities Sharon was capable of. Through mutual exploration with the counselor, Sharon was able to greatly enhance her independence in several areas.

Benefits to the Independent Living Approach

If the person-in-environment approach can be criticized for being too intrapsychic, the independent living approach can be criticized as viewing problems too much from an external perspective. Independent living may be too quick to assume that consumers already have knowledge and abilities rather than recognizing that they may need assistance to develop their strengths. The following example illustrates the differences.

Jim, age 28, had a traumatic brain injury. He sought assistance with budgeting and financial difficulties at an independent living center. The independent living counselor, who was also a MSW student in practicum, helped Jim develop a budget and strategies to deal with creditors. During the sessions with Jim, it became apparent that his head injury was also a contributing factor to significant marital and family difficulties. However, because these problems were not problems identified by Jim, the counselor felt constrained from intervening in this area

Jim seemed relatively unconcerned by his marital situation (almost certainly because of lack of insight as a result of his head injury). However, his wife and adolescent daughter were in significant distress. Competent counseling was available at the independent living center but was inaccessible unless Jim identified problems and requested help. Although his family could seek counseling at a mental health center, this center did not employ people who understood the implications of brain injury. Therefore, no marriage reconciliation services were provided. Jim and his wife later separated and divorced, and

Jim’s wife maintained primary responsibility for their child. By the time Jim became responsive to the need for help, it was too late to save his marriage.

In Jim's case, the independent living approach resulted in a lack of intervention, which ultimately had negative effects on Jim and his family, in part because independent living’s narrow view of the consumer does not include the family. This case also illustrates the conflict between absolute self-determination and the need to sometimes impose professional intervention. Although some would argue against any change in Jim’s intervention, a social work approach would have allowed for broader intervention and ultimately may have been more empowering to Jim and his family.

Conclusion

Social work and the disability movement have much to offer each other. However, before both can forge a partnership, the social work profession must work to increase the low numbers of social work students, practitioners, and education with disabilities (Mackelprang, 1993); re-examine its attitudes and beliefs about people with disabilities (Salsgiver, 1993); provide disability-competent education; and become more involved in disability advocacy work in agencies with activist philosophies. Social work can contribute decades of experience with the ecology of society and multiple systems. The disability movement can help social work enhance approaches to clients, better empower oppressed and devalued groups, and understand the needs of people with disabilities. It is a partnership that is long overdue.

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National Policy for Persons with Disabilities

Rehabilitation Measures

Rehabilitation measures can be classified into three distinct groups: (i) physical rehabilitation, which includes early detection and intervention, counseling & medical interventions and provision of aids & appliances. It will also include the development of rehabilitation professionals. (ii) educational rehabilitation including vocational education and (iii) economic rehabilitation for a dignified life in society.

Physical Rehabilitation Strategies

a. Early Detection and Intervention

Early detection of disability and intervention through drug or non-drug therapies helps in minimization of impact of disability. Therefore, there will be emphasis on early detection and early intervention, and necessary facilities will be created towards this end. Government will take measures to disseminate information regarding availability of such facilities to the people especially in rural areas.

b. Counseling & Medical Rehabilitation

Physical rehabilitation measures including counseling, strengthening capacities of persons with disabilities and their families, physiotherapy, occupational therapy, psychotherapy, surgical correction and intervention, vision assessment, vision stimulation, speech therapy, audiological rehabilitation and special education shall be extended to cover all the districts in the country by active involvement and participation of State Governments, local level institutions, NGOs including associations of parents and persons with disabilities.

Currently, rehabilitation services are largely available in and around urban areas. Since seventy five percent persons with disabilities live in rural areas, the services run by professionals will be extended to cover uncovered and un-served areas. Privately owned rehabilitation service centres shall be regulated for maintenance of minimum standards which shall be laid down.

To expand coverage in rural and unserved areas, new District Disability Rehabilitation Centres (DDRCs) will be set up with support from the State Government.

The National Rural Health Mission through Accredited Social Health Activist (ASHA) addresses the health needs of rural population, especially the vulnerable sections of society. The ASHA inter-alia will take care of the comprehensive services to the persons with disabilities at the grass root level.

c. Assistive Devices

The Government of India has been assisting persons with disabilities in procuring durable and scientifically manufactured, modern aids and appliances of ISI standard that can promote their physical, social and psychological independence by reducing the effect of disabilities.

Every year through National Institutes, State Governments, DDRCs and NGOs, persons with disabilities are provided with devices such as prostheses and orthoses, tricycles, wheel chair, surgical footwear and devices for activities of daily living, learning equipments (Braille writing equipments, Dictaphone, CD player/ tape recorder), low vision aids, special mobility aids like canes for blind, hearing aids, educational kits, communication aids, assistive & alerting devices and devices suitable for the persons with mental disabilities. The availability of devices will be expanded to cover uncovered and under-serviced areas.

Private, public and joint sector enterprises involved in the manufacture of high tech assistive devices for persons with disabilities will be provided financial support by the public sector banks.

d. Development of Rehabilitation Professionals

Human resource requirements for rehabilitation of persons with disabilities will be assessed and development plan will be prepared so that the rehabilitation strategies do not suffer from lack of manpower.

Promotion of Non-Governmental Organizations (NGOs)

The National Policy recognizes the NGO sector as a very important institutional mechanism to provide affordable services to complement the endeavors of the Government. The NGO sector is a vibrant and growing one. It has played a significant role in the provisions of services for persons with disabilities.

Some of the NGOs are also undertaking human resource development and research activities. Government has also been actively involving them in policy formulation, planning, implementation, monitoring and has been seeking their advice on various issues relating to persons with disabilities.

Interaction with NGOs will be enhanced on various disability issues regarding planning, policy formulation and implementation. Networking, exchange of information and sharing of good practices amongst NGOs will be encouraged and facilitated.

The following programmes will be undertaken:

i. A Directory of NGOs working in the field of disability will be prepared properly mapping them by geographic regions along with their major activities. For NGOs supported by the Central/State Governments, their resource position, both financial and manpower will also be reported. Disabled persons organizations, family associations and advocacy groups of parents of disabled persons shall also be covered in the directory identifying them separately.

ii. There are regional/State imbalances in the development of the NGO movement. Steps will be taken to encourage and accord preference to NGOs working in the underserved

and inaccessible areas. Reputed NGOs shall also be encouraged to take up projects in such areas.

iii. NGOs will be encouraged to develop and adopt minimum standards, codes of conduct and ethics.

iv. NGOs will be provided opportunities for orientation and training of their human resource. Training in management skill which is already being provided, will be strengthened. Transparency, accountability, procedural simplification etc. will be guiding factors for improvement in the NGO-Government partnership.

v. The NGOs shall be encouraged to mobilize their own resources to reduce the dependence on grants-in-aid from the Government and also to improve the availability of funds in the sector. Tapering of assistance in a schematic manner will also be considered so that the number of NGOs to be helped within the available resources could be maximized. Towards this end, NGOs will be trained in resource mobilization.

Collection of regular information on Persons with Disabilities

1. There is a need for regular collection, compilation and analysis of data relating to socio-economic conditions of persons with disabilities. The National Sample Survey Organization has been collecting information on Socio-economic conditions of persons with disabilities on regular basis once in ten years since 1981. The Census has also started collection of information on persons with disabilities from the Census-2001. The National Sample Survey Organization will have to collect the information on persons with disabilities at least once in five years. The differences in the definitions adopted by the two agencies will be reconciled.

2. A comprehensive website for persons with disability will be created under the Ministry of Social Justice & Empowerment. Organizations both in public and private sector will be encouraged to make their websites accessible to the visually impaired using Screen Reading Technologies.

Research

For improving the quality of life of persons with disabilities, research will be supported on their socio-economic and cultural context, cause of disabilities, early childhood education methodologies, development of user-friendly aids and appliances and all matters connected with disabilities which will significantly alter the quality of their life and civil society's ability to respond to their concerns. Wherever persons with disabilities are subjected to research interventions, their or their family member or caregiver's consent is mandatory.

Principal Areas of Intervention

Prevention, Early Detection and Intervention

In order to ensure prevention and early detection of disabilities, the following action will be taken:

i. National, regional and local programmes of immunization (for children as well as expectant mothers), public health and sanitation will be expanded.

ii. Medical and para-medical personnel will be adequately trained and equipped for early detection of disability amongst children.

iii. Training modules and facilities in disability prevention, early detection and intervention will be developed for medical and para medical health functionaries and Anganwadi workers.

iv. Training programmes of postgraduate, undergraduate degree and diploma in medical education will include modules on disability prevention, early detection and interventions.

v. Disability specific manuals for families having persons with disabilities will also be developed and provided free of cost.

vi. Human resource development institutions will ensure that the personnel needed to provide support services such as special education, clinical psychology, physiotherapy, occupational therapy, audiology, speech pathology, vocational counseling & training and social work are available in adequate numbers.

vii. The latest research findings in the field of genetics will be utilized appropriately to minimize congenital disability including mental illness.

viii. Appropriate plan of action for limiting effects of disability and prevention of secondary disabilities within the existing health delivery system will be evolved.

ix. Attention will be paid towards improving awareness of nutrition, health care and sanitation amongst adolescent girls, expectant mothers and women in the reproductive period. Awareness programmes for prevention will be built in at the school level and at the level of teacher's training courses.

x. Programmes will be undertaken for screening of children to identify at risk cases.